In Honor of Invisible Illness Week, Sept 10-16

This week is a week of awareness, for people that have invisible illness.  To me, that means that there are people around you, EVERYWHERE, that have something going on in their lives that prevents them from living fully, engaging in the things that give them joy.  Oh, and the meds.  They take a shit-ton of pills.  For people that put up with this kind of shit-like me-some of our hope comes from knowing we are not alone.  Also, we can find connections with people around us, struggling with similar issues.  I have encountered many inspirational things over my past years dealing with my health problems, and I hope this helps people to understand what it's like, to be ME.

***If you know someone that is struggling with an invisible illness, send this blog to them.  Or find a resource for them in the are.  Or call them from the store and ask what they need.   Or, all 3!
  

1. The illness I live with is:
Chronic Lyme Disease, Fibromyalgia, Chronic Fatigue, Reynaud's Phenomenon, Major Depression
2. I was diagnosed with it in the year:
FM in mid-2011, everything else sporadically til Jan 2012, when I got the Chronic Lyme Disease dx. Apparently, everything wrong with me is supposed to go away when the Lyme Disease subsides. 
3. But I had symptoms since:
Wow.  Seriously?  My Lyme doc and I traced it back to when I was 13ish (1985?).  I have struggled with various things potentially because of Lyme off and on since then, including debilitating Sciatica since I was 23.
4. The biggest adjustment I’ve had to make is:
Another wow.  Letting go to what I thought my life was?  The things I valued?  Being the person I thought I was? 
5. Most people assume: 
I don't know.  Maybe they assume that I will be well soon?  That I have some bug that will be cleared up? they must think I am a slow learner, by now. 
The hardest part about mornings are:
Walking, getting some range of motion into my lower limbs, and checking energy to see if my anticipated plans for the day are still possible.
7. My favorite medical TV show is:
I used to dream of meeting a real Dr. House, but I'm not much of a "drama show" person, because medical shows and the news just stress me out!
8. A gadget I couldn't live without is:
  My smartphone.  I have to be connected to the people I met through my illness---email, Facebook, blogging.  Plus, I can work from anywhere, when my brain works well enough for work.
9. The hardest part about nights are:
Hoping I can sleep.  Sleep has been very difficult, and I don't want to go back on sleeping pills ever again.
10. Each day I take __ pills & vitamins.
32.  4 times per day, spread out.  Plus some homeopathic tinctures.
11. Regarding alternative treatments I:
I am open to anything that will help me take back my body.  I used to hate pharmaceuticals, and I don't think now that I would be as far as I am without them.  But, I work heavily with my acupuncturist to coordinate with my other docs.
12. If I had to choose between an invisible illness or visible I would choose:
Invisible.  When I am having a good day, I sometimes forget things have been really bad for me.
13. Regarding working and career:
I have had to grow a lot, letting go of the thought that people couldn't function without me, that they could carry on with the way I wanted things.  I actually have grown quite a bit, professionally through this, and would not change learning to trust others at work.
14. People would be surprised to know:
How many problems I have with my brain.  When I mention forgetting words or names, they usually say something like, "Oh, you're just getting old", but really?  Neurologically, those are the symptoms that scare me the most, and told me the Lyme Disease was in my brain tissue.  I'm only 39, I should not have the neuro symptoms I have.
15. The hardest thing to accept about my new reality has been:
Watching my children and husband see me struggle.  I don't want my children to grow up thinking women (or ME!) are weak, can't take care of themselves.  And I have often worried about other people think that maybe don't know my illnesses, that they think I'm lazy, or taking advantage of others.
16. Something I never thought I could do with my illness that I did was:
Be open with people about what is really going on, and being able to reach out to others.  I never thought I would want to be an advocate
17. The commercials about my illness:
Don't exist.  One day they will, and doctors will have more education about Chronic Lyme Disease.
18. Something I really miss doing since I was diagnosed is:
Be physically active
19. It was really hard to have to give up:
Gluten, and sugar.  In fact, I'm working on this a week before posting, and I seriously doubt I have made much progress in the "sugar" area. 
20. A new hobby I have taken up since my diagnosis is:
Blogging!  What an amazing outlet.
21. If I could have one day of feeling normal again I would:
Spend the day at Disneyland, walking forever, eating garbage, and having a great time with my family!
22. My illness has taught me:
To be more compassionate, and respectful of others. So many people struggle, and being a judgmental bitch, while hilarious, is taxing.
23. Want to know a secret? One thing people say that gets under my skin is:
"Oh, that happens to everyone, you're just getting old."  The last time 39 was old, we didn't have plumbing.  Or the wheel.
24. But I love it when people:
Try to include me in everything, even things they may think, or know, I can't do.  I like having a choice to try or not.
25. My favorite motto, scripture, quote that gets me through tough times is:
When my husband says, "I got this".  Or "It is what it is".  or a bunch of other sayings that are full of bad words.
26. When someone is diagnosed I’d like to tell them:
Take it one step at a time.  Do your research, pick what you want to start and take it easy.  But most of all, don't give up.  Reach out to people that can help you.  Find others struggling with similar things.  Take control over what you can, and remember that you can tolerate much more than you think you can.
27. Something that has surprised me about living with an illness is:
I'm happier with many of the life changes I had to make, even the ones that were the toughest.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Believed me.
29. I’m involved with Invisible Illness Week because:
I have had the opportunity to reach out to others going through similar things.  I would like to think that I have helped them, given them some ideas or inspiration.
30. The fact that you read this list makes me feel:
Accepted.

Here are some people that have inspired me over the past year +:

The Bloggess---she struggles with depression, among other things
Christine Miserandino----the author of The Spoon Theory,a MUST-READ for people with invisible illness, and those that want to understand them.

The One Where I Try To Learn Something New

With me, my Lyme Disease is heavy in the neurological problems.  For instance, I can't learn something new like how to put my IKEA purchase together in 485 EZ steps.  I can't seem to process information enough to discern what I am actually supposed to do with the information. Reading legal docs?  Not happenin'.

I suppose it's a lot like being a complete dipshit.  Without the drool, though.  Usually.

So, Sky King signed up to be the photog for our son's Midget Football team.  No, our son is not a midget, but he plays in a league that names 14 year olds after little people.  I know, I know.  Maybe it should be the Little People Football League?  But then, people might think it's a bunch of Fischer Price toys out there. Which would be even weirder than a bunch of 5 foot ten inch midgets. 

Where was I?

Right, learning something new.

To upload some of the photos, I can do one of several things:

• (Oh, bullet points, I have missed you so!) 
• Download them to a disk, and pass it to someone at football that gives a shit
• Upload them, one by one, to the Facebook "Like" page (Hint:  NOT happening)
• Figure out an amazeballs way to put them all together, then upload that wonderful project in all its glory, to the amazement of dozens, becoming a legend

I decided on that last one.  Which meant that I had to figure out how to do that, outside of Microsoft Word, the one program I knew before I grew stupid.

So I perused, searched, travelled through the internets, looking for the perfect program. First, I searched, "online photo collage free upload Facebook". You may notice I don't put my words in the right order.  I'm not sure it matters, and I certainly don't care. Fuck correct order.

I tried out Photospills.  Problem?  I can only do one, there seems to be no way to add words, and I would have to pay for it to truly use the features I want to try out.  That was a 10 minute download I'll never get back.

Then I found Smilebox.  Which is NOT about happy vajayjays.  :::disappointment:::

What it is, is malware.  It uploaded some shitty extra favorites toolbar crap, and then when I figured out how to remove it, it did it AGAIN.  So I had to give it to Sky King, for him to fix.  Grrrr, malware.   And, it changed my start page.  Sneaky bastards.

Then, I watched most (baby steps, people!) of a YouTube video on how to work Picasa to do a collage.  Got bored.  Also? No text options.  :::sigh:::

Then, I thought, maybe I will use Word.  I know how it works.  But I realized I would not have good blog fodder.  :::bigger sigh:::

So back to the Google, I go.

I then went to Shutterfly, which I have used to make albums that are awesome.  I couldn't find what I needed there, and proceeded to expose my children to more bad words than Sky King thought possible.  I don't do well when things are difficult, irritating, or not going my way.  So, onto a new search:  "online scrapbook page sharing".

PiZap.  Holy mother of all that is full of photog goodness!  I uploaded the photos, quick as snot, put a fancy boarder on, filled in some text, then BOOM!  Happy me.

The neat thing about this photo is this:
Sky King was playing with the camera that we still don't know how to use (gimme a break, it's only been 3ish years), and we had it on sport mode, which takes a bunch of photos quickly.  He captured the entire play from leaving the pocket, throwing, a great catch and the touchdown signal from the ref!  Couldn't have planned it better. See why it had to be spectacular?

Phew.  My brain hurts.  I feel bad for the guy that called me in the middle, asking if I had "just a minute" to hear about Prop 32 or some such shit.  I usually listen, but I said, "Sorry, it's late in the day, I can't handle any more info or my head will explode", he responded with, "Vote no, then". Smart man.  Done.

After it was all said and done, some awesome person I'm friends with uploaded all his stuff to photobucket through Facebook, which probably does what I want.  Whatevs, asshole.

I figured something out, no one was unnecessarily stabbed, and apparently I'm voting "NO" on something important.  That's a big-ass WIN in my book.

Laborious Bitching. And BBQ.

In a perfect world, the worst weekends would be the three-day variety.  Because all the other ones would be four-day.  But with no kids.  And wine by the box by the case.  Sorry, my redneck peeked out just a little.

But I digress.

For this particular Labor Day, I celebrated by driving with the fam and our favorite sidekick to see some family in Far Far Away.  This involved $150 in fuel, and 3 potty breaks.  Also, $43 in snackfoods.  And 294 threats to "beat your asses if you don't stop". And 4920 pounds of cargo. Cos that's how we roll.

The weekend was chock-full of highlights:

We ate split-pea soup at the Mecca of Soup (Pea Soup Andersen's) along highway I-5.  Or, "the five" as the so-calis will say.  But they are wrong. Anywhoo, most of the food was mediocre, served by an angry uni-brow with a woman underneath it.  But the soup?  Monkey Boy and Sidekick were in heaven.  And Princess found a gummy alligator that had to travel along with us the rest of the way, at least until she got hungry again.

MB and Sidekick, being Spazzes.

Sidekick was convinced to do the Truffle Shuffle in the middle of the dining room at the restaurant.  Maybe that's why they gave us Uni-brow as a server?

Then, we had a fun-filled weekend with family and friends, old and new. We wine-tasted wine-gulped our way through the county, with designated drivers, and bangin' discounts that would make the V-est VIP salivate. (Thanks, Ev!)

The Princess made new friends, who also love 4-leggeds as much as she does, and they all enjoyed collecting eggs, and dog nibbles, and pockets full of doggie slobber.

Monkey Boy and Sidekick were coerced/threatened/swore at to do dishes (their Labor, my Bitching, which is labor enough, I must admit), and it only took a Congressional Proclamation and slight bodily harm.  Bravo, us! And, the boys only got thrown into the pool fully clothed once.  Mostly because the menfolk got tired with the first go-round.  And the boys had a Sharpie-filled retaliation planned.  Sky King survived, mostly.  He still isn't speaking to me, for not protecting him.  I keep telling him, 8 pm "naps" are begging for consequences.

In true American fashion, several people worked hard to chip away at excessively pink livers.  Once again, Success!

 And me?  I managed to survive with few medicinal assists, and only a smattering of excessive naps.  Which once again gives me hope that things will get better, some day.

:::sigh:::

To dream, perchance to binge-drink.